Brittle Bone Consortium

As discussed at the conference we are encouraged to participate in any and all self report studies about people with OI to help validate the information gathered. The Brittle Bone Consortium of the USA has several studies they are conducting that you might participate. They’re website for a list of studies is https://www.rarediseasesnetwork.org/cms/bbd/Get-Involved/Studies

Also, the Consortium is encouraging the carers of people with OI to participate in a study. If they have over 100 respondents of one disability type they will provide the data for that condition which could be very interesting! Information:

Rare Disease Caregiving Study

A new national policy study, the Rare Disease Caregiving Study, looks on the impact of caregiving for the caregivers who support children or adults with rare diseases, conditions, or disorders. This study is a joint initiative between the National Alliance for Caregiving partnered with Global Genes. While this study is not affiliated or funded thr ough the Rare Diseases Clinical Research Network, the study seems noble and applicable to our community. This is not an endorsement of the study results. Still, more than 300 people have already participated in this study. The study is open until October 31, 2017.

The study will collect insight from the friends, neighbors, and family who are providing unpaid care to someone with a rare disease, condition, or disorder. In many communities, the volunteers who provide care are called “family caregivers.” The study will identify their needs, similar to other national studies on caregiving such as Caregiving in the U.S. 2015, conducted by the Alliance and AARP. Findings will be aggregated and shared in a report to Congress in February 2018. The report will include recommendations to help rare disease families that can be used by policymakers, health insurers, health care providers, and others .

Some basics about the survey:

Any adult caregiver who has supported a child or adult with a rare disease in the last year can participate.

The survey is anonymous and responses will only be used for the purposes of this research (no individual information will be shared and the data will not be sold).

The survey takes about 20 minutes to complete and respondents can opt-in to participate in future research. ;

If100+ responses can be gathered from caregivers representing a particular disease or community, the Alliance will highlight the caregiving needs of that specific community.

The final study and the data set will be made available to the public free of charge for future research.

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Osteogenesis imperfecta (OI) is a genetic disorder that causes a person's bones to break easily, often from little or no apparent trauma. OI is also called "brittle bone disease." OI varies in severity from person to person, ranging from a mild type to a severe type that causes death before or shortly after birth.